Regina Holliday is not special!

I’m sure that got your attention! But that is exactly Regina’s message: We are all patients . Both collectively and individually we are the most important and the most silent stakeholder of the healthcare system.

To discuss the expanding role of the patient please join us at the Patients 2.0 session to plan the next phase of action for patients, citizens and other people passionate about improving healthcare, working both online and face to face. Regina will be there!

Of course Regina is a spectacular and obviously very special human being, amazingly multi-talented, able to create unique and powerful distributors of great wisdom, either through her art, her powerpoint presentations or her straight talks. Of course she has helped shape the national conversation about patient empowerment and individual access to one’s own health data. She is, notwithstanding her great humility, a true mover and shaker. But most importantly, we must all be listening to what she is telling us and be able to forget her genius for an instant and conclude that, in fact she is not special at all. She just said it again, in a tiny comment on Dave’s latest post about his experience becoming a professional patient:

I disagree with the comment that at some point we stop being “patients.” We are all patients, and some of us are e-. But this is the role we must all take up in points throughout our life

I’m not sure you understand the context of the statment I made about patients being seen as ‘damaged goods’ – one that I do not agree with myself. I was wondering why ePatients like Dave struggle to be heard and are not adopted or sponsored corporately. This was one of the reasons I gave in a tweet to him, and my next tweet to him was “..i.e. it sucks!” Dave asked me to post it here. I don’t see patients in that way. You read more into that than was ever intended.

Secondly, my post at KevinMD was edited to remove links to prominent ePatients and their initiatives, and the title was changed to what it was, rather than my preferred title of “The risk of anecdotal medicine in the ePatient movement.” Kind of changes the tone, don’t you think? I don’t like it, but have agreed to allow editing on my contributions. It’s his blog after all.

I sent a copy for an opinion before posting to another prominent epatient who found no offense with it, as I had written it originally. I also said – read the post again – “There may be expert patients out there, but I believe that denotation demands explanation, and e-Patient advocates and their blogs need to make sure that their information carries disclaimers that they do not have medical training or qualifications, and that the contents thereof are opinions, not medical advice.”

I would prefer you look at, perhaps you have, at http://www.consentcare.net and the thoughts behind that, or at our iPhone app SurgAware

Neither of these initiatives has done very well as yet because there is little or no incentive from the corporate, medical burocratic world to change the status quo – nor is there much from doctors. The greatest potential for initiating change comes from PATIENTS, by demanding that doctors use tools like these!

But it seems even the few expert epatients like you don’t see the potential in seemingly simple offerings like these! Dave didn’t. And I couldn’t get why he didn’t – for me it is a no-brainer! I believe the biggest way to change the system for the better is by making sure informed consent is done properly. This is about TRANSPARENCY – and that is the thing above all things that we need to improve. The second thing about improved consent is that if the documentation is in the patient’s possession, there is an ethical yardstick of sorts by which doctors can be assessed that goes far beyond the rating systems so popular in the USA.

I had a thought the other day that what is happening now is much like the reformation of CHristianity several centuries ago when the Bible was written in Latin, preached in Latin, and all theological insight was kept to the educated and the priesthood, with horrible abuse as a consequence. It took a person like Martin Luther to break that political power and bring religious insight and knowledge AND FREEDOM to the masses. To a certain extent I see the same initiatives, and the same need, here.

We really are on the same side here. I suspect my
views as they are will be far more frowned upon by many more of my colleagues than by my patients.

In other words, it’s a new journey for me, and I must feel my way with caution.

But thanks for challenging me on the perceptions you have – not all accurate, as I am sure many of mine of the whole epatient movement may not be!

Your request that people blogs contain a warning that they are not health professionals and cannot provide medical advice is hard to understand, from my viewpoint. First, it repeats the view that people only communicate through blogs, an erroneous concept that completely bypass the 10,000s of medical online communities where the active networking with expert patients takes place.

Secondly, patients are not paid to provide support to other peers and should not be subjected to the same limitations as professionals who financially benefit from their interactions with patients. Your request is based on the fact that licensing entities are there to first protect your business, not my life.

I am really sorry to hear that ypu are finding it difficult to grow your business. I can;t speak for Dave but when you write: “The greatest potential for initiating change comes from PATIENTS, by demanding that doctors use tools like these” it sounds like a non-starter to me. Patients must first decide a tool is of clear benefit to them. In fact, as we have seen with ACOR, people naturally use tools when they instantly and naturally derive a benefit. ACOR has never spent a cent in marketing and was designed for years to just happen, under the radar. It has never stopped its growth. And any doctor who tries to stop ACOR subscriber from using ACOR will just lose these patients. It’s as simple as that!

Patient empowerment and the transformation of the healthcare system into a system putting the patient at the center of all the transactions, from translational research to the creation and maintenance of disease treatment guidelines, happen slowly and cannot be accelerated artificially.

I hear your concerns and they’re valid and understandable, but there is evidence (more than five years old) of how the world has changed.

Honestly I think this discussion will be more useful for you if you first read the e-patient white paper “E-Patients: How They Can Help Us Heal Healthcare” at the top right of this blog, or at least read the chapter summaries in the wiki version.

Here’s a very short version:

1. In several YEARS of seeking a case of “death by googling” (finding lethal wrong info online), Dr. Gunther Eysenbach found ZERO cases. It turns out people are pretty much not stupid enough to think what they find online is gospel.

2. Conversely, the Institute of Medicine’s 2000 report “To Err is Human” documents as many as 98,000 deaths in US hospitals per year from preventable medical errors. Patients and families would be VERY well advised to study up, because lethal mistakes happen all the time.

3. A far more challenging social problem is that docs are limited in how current their knowledge is. The drug that saved me, interleukin-2, is today far safer and more effective than when the FDA’s current approved warnings say.

Honestly, Martin, you need to read that paper before you can get any value from talking with the people on this blog, all of whom know about it.

Gilles, thanks for the courage to be complete and (knowing you as I do) intentionally, productively controversial. All of us at WEGO Health are proud to be at the nexus of the patient empowerment movement – and especially proud that role-model Health Activists like Donna Cryer see that our goal is to empower Health Activists’ passion to go far beyond themselves. Health Activists take real-life experience, add a comfort with social and clinical technology (we are e-Patients!), and ADD the magic ingredient of passion to help as many other people as possible with their health.

Great to see Martin and KevinMD involved, along with SOPM leader Danny Sands, MD of course – because no matter how we look at this, the Health Activist/ePatient movement is accelerating a shift from “I am patient” to “I am a partner in my care, very often deeply educated/expert in my disease.” Every day on WEGO Health, we hear from Health Activists who counsel their communities on how to advocate for a peer relationship with their doctors.

I came to Health 2.0 for the first time out of curiosity and because, professionally, I am looking at how to create patient interfaces that truly empower patients and don’t defer to the power/control medical discourse (when will we ever shake off the lab coat and stethoscope signifiers Martin!) . But I was really surprised and touched by the collective passion and energy of the Patients 2.0 seminar. For me, it has so far been the most relevant part of Health 2.0 and should surely be a greater force in the event in future.

Last year I lost a true friend and colleague who fought for over 20 years for proper patient advocacy and empowerment in the NHS. His name was Bob Sang, and he was appointed by South Bank University as the UK’s first professor of patient and public involvement. He was passionate, caring and much loved and he would have been so at home in the Patients 2.0 seminar and engaging with people like Dave and Regina and Gilles and Amy and Nicole.

He was a disciple of Kate Lorig and together we worked on major projects in the UK including the Expert Patients Programme. We had a vision for a network of health entrepreneurs, where patients were able to openly inform innovation. I think Patients 2.0 was possibly the most vibrant and relevant event I have attended and was completely made by people like Regina with her emotion and passion and powerful voice. Many, many thanks.

Oh, by the way, a week ago we held the first Bob Sang Open Space in London (organised by his widow Lisa) and attended by over 100 key players in UK healthcare and this was a great success – website: http://www.bobsangopenspace.org/